Outreach and Sustainability – what’s it all about?


EHDEN has a dedicated work package (WP) focusing on the outreach and the sustainability of the project as it is today and beyond the 5-year timeframe of the project. In this article, WP6 Leads, Johann Proeve and Carlos Diaz zoom in on the work done so far in these two important workstreams.


To guide the outreach activities in EHDEN, we asked the full EHDEN consortium to help identify the main stakeholders for EHDEN.  We identified Data Partners, Academia, Patients and Patient Organisations, SMEs, CROs, Pharma, Regulators and Payers as the main stakeholders for this project.

For each of these stakeholders, we developed a value proposition. These value propositions were mainly structured by the following topics:

* Objectives of our outreach activities, for example, raising awareness around real-world evidence and to trigger commitment with respect to providing data, developing tools for analyses, and using the data for scientific questions, etc.

* Key concepts of the value proposition, mainly addressing the major benefits for the respective stakeholders. These could be participation in international, well respected studies, exchange of ideas concerning new treatment options, development of cutting-edge analyses tools, help to drive their business, use of the data for rapid analyses for important questions (rather than running complex studies over a lengthy period of time), better understanding the treatment options for patients, and being positioned to re-run pharma-generated analyses based on a huge data set, thus enabling quick decisions on a go / no-go question, and getting access to material to teach students, etc.

* For each of the Key Benefits or concepts, details were developed describing the benefits specifically and to facilitate approaching the stakeholders with a broad palette of information that encourages the stakeholders to become part of the EHDEN network

* Format of interactions, i.e., via video conferencing, face-to-face meetings, conferences, via telephone, etc. Choosing the best channel will depend on the type of stakeholder

Development of these value propositions is, however, an iterative process as we continue to further refine these value propositions throughout the project lifetime. For example, the SME value proposition and a questionnaire have been sent out to the SMEs that have applied to our open calls. Overall, the response was positive, indicating that our value proposition cover the main aspects of why SMEs are interested in working with the EHDEN consortium. The additional feedback captured via the questionnaire will be used to refine the first version of the value propositions for SMEs. Other stakeholders will be approached with a similar brief questionnaire in due course.


The EHDEN consortium had decided to start working on the sustainability area well before the end of the project. This was mainly driven by the fact that many other IMI projects struggled transitioning from an IMI project to a self-sustained business. Since – in most cases – this topic had been addressed too late in the project.

Public Private Partnership Fiche (PPP)

The working group on PPP started collecting information about other IMI projects and initiatives relevant to EHDEN, and we created a list of twelve other projects.

For these  projects, various details were captured such as innovation, competitive advantage, cooperation/collaboration/organisation, therapeutic area (if applicable), the role of databases, the services aspects, who pays for the services, who supports the organisation, revenue streams, the budget and costs as well as the stakeholders, key success factors and limitations, and what can be learned with regard to sustainability.

Currently, the team is working on a detailed analysis of the information provided so far and is trying to drill down to the success factors and limitations in particular. These are important for the EHDEN project since we do want to learn from those projects to avoid  making the same mistakes.  

A scoring table has been developed in order to help us to better interpret the data/information and to facilitate getting a comparable overview of the PPPs.

Assessment of the jungle vs the greenhouse and the options in-between

While all of this work has been ongoing, we also had two workshops so far on the sustainability of EHDEN. The implementation of the sustainability plan could already start  during the EHDEN project or towards the end of the project, with the former timing being preferred.

The main discussions and eventually a decision will focus on how much the future of EHDEN with all its components will have to be ‘controlled’. Should the project be handled like “a jungle“, in which all participants are ‘free to do what they like’, while hoping that the scientific community will handle all aspects of the EDEN environment like a very valuable asset? Or do we need to create “a greenhouse” environment where everything will be controlled to the smallest degree of detail? Or will the best way forward be some combination of these two extremes?

Time will tell and we will keep you updated on the progress.